There is a long-standing argument for engaging communities and individuals with lived experience in health care policy and service design and delivery. NHS England’s guidance on working in collaboration with communities emphasizes the advantages in terms of financial and improvement to health outcomes and quality of working in partnership with communities in their local area. We at The King’s Fund have documents and blogs that reinforce this idea and force systems to think differently regarding engaging with the local community and those who have personal experience with services in the design and delivery of services. But can this involvement extend further? Some advocate for using intersectional strategies to understand better the lived experiences of healthcare in dealing with health disparities of ethnicity. These approaches aid health professionals and healthcare providers in focusing not just on people’s behavior but also on looking for and addressing the methods of working that cause and increase inequalities, as well as poor experiences with healthcare.
This season’s GSK the IMPACT Awards, I met a director from a non-profit and community sector organization, and this blog is about the discussion we had about interconnectedness and lived experience. He introduced me and discussed my interest in the way health and healthcare professionals deal with ethnic minorities and their lived experience of services to address inequities regarding access to care, outcomes, and access, with particular attention to gender and the use of intersectional perspectives. I’ll admit that it was a long speech. He laughed at me and stated, ‘I am tired of hearing about intersectionality and lived experience from health professionals – what exactly does that mean?’ I laughed because it was not the first time I’d encountered such a statement. We often, as professionals, apply concepts in ways individuals outside of our immediate group or industry might need clarification.
People with different cultural, national, or other backgrounds might need more expertise or a professional understanding of how systems function. However, their experience is valuable in designing policies and services that meet the needs of people and reduce health disparities among ethnicities.
What is a living experience? The idea of a live experience has been introduced previously. The living experience is about analyzing how people interact with services from their point of view and the meanings they get from these encounters and experiences. Experience people provide a unique perspective on the policy of health and care as well as service design and delivery. Discussions regarding working with those who have lived experiences must be placed in the context of health and care, which is often interpreted as an opportunity to gain expert knowledge and data that can be quantifiable. This is especially true for minorities of ethnic origin, and their contribution to policy and design is usually minimal, leading to poor health quality of care and poor health outcomes. People of different cultural, national, or other backgrounds might need more expertise or professional expertise in the workings of systems. However, their personal experience can be invaluable in designing policies and services that meet the needs of people and address health disparities among ethnic groups.
Health and care professionals recognize that patients’ healthcare experiences differ due to various interconnected aspects. This is why intersectionality offers an approach to health professionals to identify better how different elements which include race/ethnicity and age, socio-economic variables, gender as well as religion, culture, immigration status, and class – interact in making specific populations disadvantaged and causing disparities. For instance, a recent report on maternal care has shown that women with Black or Asian backgrounds are at a higher risk of dying during birth and receive less medical care than women of other races. The report reveals that these disparities are due to interconnected socio-economic and structural variables, which can increase the risk of dying. An intersectional approach, for example, aids healthcare professionals in comprehending the many factors that lead to gender-based disparities in health and helps develop effective treatment strategies.
Moving the focus away from individuals’ behaviors to system processes and practices allows services to challenge the models of care that view people of ethnic minorities as victims who have no agency.
After many discussions, we both agreed that while concepts and terminology might evolve in time, the principles of engaging with those who have lived experiences that are not part of society will always remain the top priority. The organizations must consider what it means to employ an intersectional lens and to build an inclusive environment that allows services to engage people who are marginalized and whose voices are rarely acknowledged in any meaningful manner.
